Four-year-old Eliza O’Neill of South Carolina is suffering from Sanfilippo syndrome. She’s losing the ability to speak and doctors say eventually Eliza will also lose the ability to walk, eat and ultimately breathe.

The O’Neill family told People the only way to protect their daughter is for the entire family of four to avoid contact with anyone in the outside world.

Eliza’s father, Glenn, works from home and mom, Cara, quit her job. Glenn told People, “It’s beyond hard, but this is what you do for someone you love.”

They’ve been living in isolation for five months and will do so until the end of the year when they’re hoping enough money will be raised to find a possible treatment for Eliza.